Building a Research Roadmap for Caregiver Innovation: Findings from a Multi-Stakeholder Consultation and Evaluation

Abstract

Across the world, informal (unpaid) caregiving has become the predominant model for community care: in the UK alone, there are an estimated 6.5 million caregivers supporting family members and friends on a regular basis, saving health and social care services approximately £132 billion per year. Despite our collective reliance on this group (particularly during the COVID-19 pandemic), quality of life for caregivers is often poor and there is an urgent need for disruptive innovations. The aim of this study was to explore what a future roadmap for innovation could look like through a multi-stakeholder consultation and evaluation. An online survey was developed and distributed through convenience sampling, targeting both the informal caregiver and professionals/innovators interested in the caregiver demographic. Data were analysed using both quantitative (summary statistics) and qualitative (inductive thematic analysis) methods in order to develop recommendations for future multi-stakeholder collaboration and meaningful innovation. The survey collected 174 responses from 112 informal caregivers and 62 professionals/innovators. Responses across these stakeholder groups identified that there is currently a missed opportunity to harness the value of the voice of the caregiver demographic. Although time and accessibility issues are considerable barriers to engagement with this stakeholder group, respondents were clear that regular contributions, ideally no more than 20 to 30 min a month could provide a realistic route for input, particularly through online approaches supported by community-based events. In conclusion, the landscape of digital health and wellness is becoming ever more sophisticated, where both industrial and academic innovators could establish new routes to identify, reach, inform, signpost, intervene and support vital and vulnerable groups such as the caregiver demographic. Here, the findings from a consultation with caregivers and professionals interested in informal caring are presented to help design the first stages of a roadmap through identifying priorities and actions that could help accelerate future research and policy that will lead to meaningful and innovative solutions.

The use of digital technologies in the promotion of health literacy and the empowerment of the Informal Caregiver: a scoping review

“…Questions about privacy and security when using these digital tools are an important factor for users. Although there is an increasing concern about what is the best way to develop emerging online technologies (e.g., ethical data use), results show that a hybrid model with an online and in-person approach can work well for caregivers in rural areas (23). The model that includes digital technology and an in-person approach is pointed out as a more reliable model for the caregiver.…”

“…Caregivers say that, by using digital technologies, they are able to get basic information about the disease, such as symptoms and treatment options, and about existing resources and equipment, which makes them feel less lonely in this role (17,(22)(23). With the support of digital tools, caregivers felt recognized and heard and could express their uncertainties, stories and suggestions, which increased their commitment to care provision (22).…”

“…There is a study describing that new technologies that are only focused on the task can lose their value, as they lose the capacity to provide information that is relevant to caregivers' needs (17). It is important that informal caregivers collaborate in the development of technologies because their deep knowledge of the needs and existing gaps contributes to technological innovation, which allows to overcome the existing technological barriers and learn facilitator mechanisms (23).…”

“…Using digital technology in the health eld can bene t the population and the caregivers (17-18, 20, 24-25). Studies showed that both ICs and the people cared for use digital technology (23)(24). The WHO has de ned a long-term strategy for the expansion and use of digital health, emphasizing the positive impact that it can have on healthcare access and provision, as well as on the health and well-being of the population and caregivers (23).…”

“…Studies showed that both ICs and the people cared for use digital technology (23)(24). The WHO has de ned a long-term strategy for the expansion and use of digital health, emphasizing the positive impact that it can have on healthcare access and provision, as well as on the health and well-being of the population and caregivers (23). According to literature, health technology is "one of the strategies used by the healthcare professional to empower citizens to used it in a secure way" (29).…”